My name is Natalia, and about three months ago, I was diagnosed with Polymyositis.

I just went in for a routine check-up at my new physician’s office because I had just moved to Florida from New York. I was going to the doctor’s because my primary care physician back in New York had diagnosed me with lupus.

I had always been very sick as a child and have suffered from numerous medical conditions. I practically lived in the hospital as a child. When I was about 18 years old, I had started to suffer from kidney problems that the doctors had no idea where they were coming from. I had been misdiagnosed about two times until the final doctor I saw in New York confirmed lupus. I had all the symptoms and what not.

When I came to Florida, I met with a new doctor and explained to him that all the problems had started when I was 18.

He believed I had lupus, but to be completely sure, he wanted to run a completely fresh bloodwork screening. When my results came back, my CPK was outrageously high and abnormal along with other things. I was at work when I got the initial call from the doctor that I had “a rare inflammatory muscle disease called Polymyositis.”

I didn’t cry nor did I feel sad. I mean, I knew something was wrong with me. I was in an initial state of shock for the most part. I later went to a rheumatologist, and he confirmed my primary physician’s diagnosis of the disease as well as scheduled me for a biopsy of my muscle tissue. I am now currently waiting for my results and living with the pain.

It’s difficult because nobody really understands or knows what it is when they ask me about it. There are some days when I am okay and the pain is tolerable and then there are other days (like today) when getting out of bed is a challenge. It sucks because I’m only 22, nobody in my family has this disease, and although they are supportive, they don’t understand.

Sometimes people think I’m lazy because all I want to do is sleep, but when I’m in pain and every muscle in my body is aching, that is all I can do. The disease has put such a limit on the things I once was able to do. I try to take the good days with the bad, trying to make the most out of the good days. I mean, that’s all I can do.

1 thought on “22-Year-Old Natalia Diagnosed with Polymyositis”

  1. Shana says:

    My name is Shana, and I am 26 years old. I started having symptoms in Jan of 2013, and the doctors suspicion that I have polymyositis was confirmed in Nov. of 2013 after a muscle biopsy. I can so relate to how you feel physically. I have a one and two year old which makes our situations a little different. I wish I could rest more, but with two young children it’s impossible. I don’t know what I would do without the support of my mother and the father of our two children. After over a year since my symptoms began, I am completely wore out both physically and mentally. I cry every morning just because getting out of bed when I’m feeling so weak and achy is a challenge. I had to switch from a two floor apartment into a one floor apartment because it is difficult for me to climb stairs. My everyday hope is to just be able to function normally. It’s also frustrating when I can’t relate to anyone around me because Polymyositis is such a rare disease. I met with my rheumatologist today, and the visit didn’t go well. After 6 months on prednisone and 3 months of weekly methotrexate injections my cpk has gone up and my liver enzymes also are high. Today I started a 3 day IV infusion treatment. I now will discontinue the methotrexate and begin a new medication. I will be continuing the prednisone. I just pray that my body responds well to the new treatment, and hopefully I’ll gain some relief after struggling for this long.

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